Making HIV -- and Bias -- 'Part of the Party' to Strengthen Our Response to the Epidemic

HIV professionals know better than most people that "Silence Equals Death." Not talking about HIV does not lead to HIV ceasing to be a profound public health challenge; the same is true for the explicit and implicit biases that underpin the HIV response. In part one of this two-part conversation, Marsha Martin, D.S.W., a veteran in HIV and public health, explored approaches to giving these biases a voice among colleagues and across agencies. Here, in part two, Martin discusses ways to remove the harm of bias on a wider scale in the epidemic response.

Olivia Ford: In the spirit of a public health approach to examining implicit bias: What's your vision for scaling these kinds of conversations in a way that might eventually lead to macro-level change in how people in the HIV field interact around their biases in the interest of better serving their clients and effectively moving toward ending HIV as an epidemic?

Marsha Martin, D.S.W.: I believe that we are on the cusp of having the tools to alter the course of this epidemic. We're right at the point where we are doing epidemic control management on our way to prevention.

Now, in order for that to be true, we have to reach and identify people who have not been diagnosed, who are not in treatment, and who are not virally suppressed -- and help all of them achieve positive health and dignity.

In order for service providers, the public health response, the global response, to be successful, we have to regroup. And we don't know everybody. Every day, a new group of people in a new neighborhood has been identified as, "Oh, we forgot this one." That's because of our biases.

I'm going to tell you a little story. About seven or eight years ago, I was in Oakland. We held something we called a think tank on HIV. We convened a lot of people in Oakland and a lot of national players. We had about 40 people in the room. I was running Get Screened Oakland, and we were not getting people to come out to get tested. I was trying to figure out what's going on in Oakland, so we had this think tank.

We were going around the room; people were giving their names. The next-to-the-last person that introduced herself was a woman who said: "Hi, my name is Nel. I'm a 64-year-old retired nurse and grandmother. And I have been living with HIV for three years."

Nel was not who we thought we were going to have in the room. This woman proceeds to tell a story about how she was on her second marriage, and married to a deacon in the church, and they went for counseling. But the only way she found out that she was HIV positive was because she found his test in his Bible that fell off the night table when she was making up the bed.

If you've seen the PBS Frontline film Endgame: AIDS in Black America, Nel is in that film -- because when they came to make that film, I said, "You have to include Nel." Because nobody wants to think about black grandmothers with HIV, who got HIV in the last five years, and who are not angry but want services and support and believe that they can help the epidemic response.

Where is Nel? There are more Nels than we can think of. Now, if we're talking about prevention, disease control and management, and ongoing treatment, what is there for Nel? How do we find Nel?

Our epidemic response up until this point has been biased in such a way that we don't even know Nel exists. We don't know how to look for Nel. On the macro level, we're going to have to do some work on the edges of our epidemic response. We're going to have to start looking at the numbers of under 5% and saying: "How do we serve them? Who do we get in the room to help us understand how we make our services available to them? And if it's not us, then how do we support the others who can do what we cannot do?"

When we get to this macro conversation, we have to even include people who think that they're not missing anyone: "We've got our targeted group." How is it, then, that every year for the last X number of years, 400 people show up in your state with HIV? Who are those same 1,700 people that end up positive every year in New York City? Are they all the same people you've been finding all along? Are there any differences in the demographics? If we're so successful, why is it the same number every year for the last 10 years?

I run large-scale testing programs. I left [the U.S. Conference on AIDS (USCA)] that Saturday to go to Oakland to run Oakland Pride HIV Outreach Pavilion. We tested 120 people in less than five hours' time. We did 173 surveys. We had 250 cups that we give people if they test or they take our survey. We ran out.

We were just trying to create an environment where it is OK to talk about HIV; it's OK to ask somebody about HIV; and it's OK to have HIV.

We're the only place that has a place to sit down at Oakland Pride; so, we go up to people and say, "You're at the Sex and the City Lounge. You're welcome to sit at our table. If you're going to sit at our table, however, we ask that you either take an HIV test or you take our survey."

The survey's about 45 seconds or five minutes; it depends upon how you read and how you think about yourself. It asks you about your sex partners, how many times you have sex, how many condoms you use. When's the last time you used condoms? Are you interested in learning about a pill that might help you to prevent HIV? Do you have health insurance?

I can't reach all those 250 people. But in the 45 seconds or the five minutes it takes you to take that survey, you're going to think a little bit. That's the best I can do at Pride.

Now, some people would say that's a waste of time, because their bias is targeted testing, and this is the only thing that the city or the state will pay for, and all CDC [U.S. Centers for Disease Control and Prevention] believes we should be doing. I'm in the heart of the risk community at Oakland LGBT Pride. We've been talking to all these people about HIV for 30 years. Why not create an environment where HIV is part of the party? We know it is, so why do we run away from it?

I've done it every year for 10 years now. It's a nice venue. We have a DJ. We have Walgreens giving out information. But my point is, it's to counter the biases! And it's to counter our own.

When we launched our first testing initiative here in Washington, D.C., when we recommended everybody get tested for HIV, we took the public health department to every Metro stop inside the Washington, D.C., metro area. We did rush hour for a week in the morning and rush hour for a week in the afternoon. I can't tell you the number of people who said: "What are you doing here? You shouldn't be out here doing this."

We have to work with the public. All of this was to create an environment where people living with HIV could feel OK about themselves. People who are concerned about it can talk to their doctors. They can get screened. They can get information. And, in the long run, we can begin to control the epidemic.

OF: It's interesting how, in some of the examples you've given, the way we approach HIV and the way we approach bias are almost interchangeable. Similar to making HIV part of the party and not putting it back in a corner: Identifying bias really seems to be about saying, "Let's not pretend bias only exists 'over there'; let's assume it's here and find ways to talk about it in our work."

Going from the macro back down to the micro level: To an HIV care and service provider who is reading this piece and thinking, "I don't have any biases; I dealt with all of that years ago," or "This is too big; I'd like to do something, but I don't even know how I can start to talk about bias in my clinic," what's one thing they can do in the near term in their work to begin to create an environment where bias is part of the party and not pushed into the corner?

MM: There are so many ways. One is to go for, say, the 5% to 8% of people that end up positive every year on the far edges of your bell-shaped curve. Take a look at who they are, and figure out how you find them. That's my Nel experience.

Look at your anomalies and ask: "How did we miss this? What did we think? We have seven people who didn't come to their appointments last month. What happened here?"

Let's not understand the answer as something they did, but as "What could we have done differently?" or "Was there bias in any way?"

You can also say, "Have we plateaued? Is everything the same old, same old, that we can plateau? Nothing new, nothing different?" If it's an epidemic, we should always still be finding people -- unless we've come to the end.

This article was provided by TheBodyPRO. It is a part of the publication The 21st United States Conference on AIDS.

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